1 Learning Disability and Choking

1 Learning Disabilities and Choking

This report was written by The Group on behalf of

Hampshire Safeguarding Adults Board.

The Group: This is a group of professionals working in

Hampshire for the Council, NHS, the Police and several

other organisations. The Group met to discuss how to

keep people safe from choking.

The Group was worried that in Hampshire 5 people with

learning disability died from choking.

The Group saw that people with learning disability were

at greater risk of choking than other people.

Reports showed that some services did not give good

care to people with learning disability.

The Group wanted to make sure that people were safe

and not at risk of choking. The Group wanted services

to:

ask for advice from GP’s and people working in Health

find out who was at risk of choking

train staff on risk of choking

choose good supported homes for people to live in

report any incidents of choking

give information for everyone on the risk of choking

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2 Choking incidents in the UK

The National Patient Safety Agency (NPSA) said that

there were many incidents of choking between 2004 –

2007. These incidents mainly happened at mealtimes

The NPSA has advice on their website to help staff look

after people with a learning disability.

Department of Health were looking into how people

died in one part of England. Improving Health and Lives

Confidential Inquiry checked the causes of death that

could be prevented. They said that some deaths were

caused by solids or liquids going down the wrong way in

the lungs, and (or) epilepsy.

The Group looked at stories in the papers about people

with Learning Disability who choked and died in care

homes. The Group looked at these stories and found

that:

o People died when the carers were not looking after

them

o First aid was not used properly when the person was

choking

o Staff were not following the care plans for eating and

drinking

o People who were at risk of choking were not protected

from that risk.

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3 What causes people with learning disability to choke?

Dysphagia:

This means difficulty with chewing and / or swallowing.

This could cause food and drink to go into the lungs

causing coughing, spluttering or choking.

A Speech and Language Therapist can check the way the

person eats and drinks and can give advice on how to

make chewing and swallowing safer.

Bad teeth and gums:

Many people with learning disability have cavities in

their teeth, missing teeth or unhealthy gums. This

causes them pain and makes chewing more difficult.

Behaviour:

People can choke if they put too much food in their

mouth or eat too fast. People can also choke if they put

non-food things in their mouth like paper or plastic. This

is called Pica.

Medication:

Some medicines have side effects that can make

chewing and swallowing unsafe like medicine for mental

health and epilepsy. Staff must know how medicine

affects people so they can help them eat and drink

safely.

Self-harm:

People can choke if they place something in the back of

their throat on purpose to harm themselves.

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4 Commissioning and Monitoring Care:

Wider Commissioning:

Local authority and health services are responsible for

making sure there are enough services to support

people who have difficulties with eating safely.

Providers:

They are the groups of carers who offer to look after

people with disabilities. They look after people in their

own homes or in group homes.

Providers must make sure that staff are trained to

support the person with their individual needs.

The Care Quality Commission (CQC):

They are the organisation that checks that providers are

good at meeting the needs of people they support.

The government asked GPs to do health checks for

people with Learning Disabilities. There is a guide for

GPs on how to complete these annual checks.

Annual Health Checks:

The GPs are checking people’s health every year to find

out if they need any treatment. This includes checking if

they have a risk of choking or need dental treatment.

In Hampshire the NHS is making sure more people have

their health checked every year. Staff called Health

Facilitators are helping GPs to know about choking risks.

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Social workers and NHS staff should assess the person

and check if they are at risk of choking.

Social workers must find a provider who is good at

looking after the person and keeping them safe. The

social worker must check that the provider is doing a

good job and that staff have good skills and information

on how to keep people safe from choking.

Every person must have a care plan to tell staff how to

look after them. A Speech and Language Therapist must

assess if the person has dysphagia and tell staff about

any risks and how to help keep the person safe.

Providers must help the person in their care to visit the

dentist for a check-up. The social worker must check in

the annual review that the person has a care plan with a

risk assessment. They must also check that staff are

trained and are following the care plan.

Recommendations:

GPs should complete an Annual Health Check.

There should be enough Speech & Language

Therapists in the service.

Every person with learning disability should be helped

to visit the dentist regularly for a check-up.

Social workers should check that the person has

dental checks.

Providers should follow the care plan of the person

who has dysphagia.

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5 Assessing Risk of Choking:

Consent to risk assessment:

People with a learning disability must agree to be

assessed. NPSA have a form to tell people about the

assessment and how they can say they agree.

Risk assessment and Dysphagia:

There are checklists that could show if a person has

difficulty with eating and drinking.

The GP should check the person if they had choked. The

Speech & Language Therapist will need to check if the

person has dysphagia. They must give staff advice on

how to help the person eat and swallow safely.

Risk assessment and behaviour:

Some people have difficult behaviours like eating non-

food items or trying to choke themselves. Those people

will need an assessment for their behaviour by the

learning disability services. Services should offer help

around those behaviours.

Recommendations:

The Person must agree to be assessed.

Refer the person to the GP or Speech Therapist for

advice.

Support staff must follow care guidelines.

The person might need an assessment of their

behaviour.

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6 Mental Capacity Act and Advocacy:

Mental Capacity Act

This is a law to say that every person can make their

own decisions and people can help them by making

things easier to understand. If a person has a disability

that makes it hard to make decisions, then others must

make sure the person is safe and healthy.

Providers must help people understand the risk of eating

certain food that could be unsafe. Providers must record

decisions of a person who has capacity to choose food

they want, even though it could cause them harm.

Advocate:

An advocate is somebody who helps a person have their

wishes and views heard.

An advocate should help the person make decisions

about what they want to eat. An advocate can help the

person understand the risks of choking and help them

say what they think and discuss it with the carers.

Independent Metal Capacity Advocate, IMCA:

This is a special advocate who helps people who do not

have the skills to make decisions. An IMCA will get

together with the doctors, family and carers to decide

the right care plan for the person in their best interest.

IMCA

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Assessments and care plans should be updated if the

person’s needs change. A person’s care plan and any

decisions made for them must be checked regularly for

any changes.

If the carers cannot agree on a decision in the person’s

best interest, The Court can decide on what is best for

the person’s health and safety.

When a person is at risk of hurting themselves if they go

into some areas of the house like the kitchen, staff must

apply for a law called Deprivation of Liberty Safeguard

(DOLS).

Recommendations:

If the person is at risk of choking they may need an

assessment of their mental capacity.

If the person’s freedom needs to be restricted staff need

to apply for a Deprivation of Liberty Safeguard (DOLS).

An advocate can help the person to understand their

care plan.

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7 Developing care plans for each person:

A person’s care plan must give clear information on how

to make meal times safe and enjoyable.

Staff must know how to support the person to sit up

and slow down when eating.

Staff also must know how to prepare meals that are safe

for the person.

Some support staff said they felt that they did not have

enough time to read or review the person’s care plan for

eating and drinking. The change in support staff makes

it harder.

Good ideas and good examples:

o Meal time place mats that show what a person can eat

safely and how to support them at meal times.

o Examples of drinks to show and explain to staff how to

make a person’s drink safer by adding the right amount

of thickener.

Recommendations

Carers and support staff must take part in the

eating and drinking care plan.

Support staff must understand what could go wrong if the care plan was not followed correctly.

A person’s care plan needs to be reviewed every 6 months

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8 Training and Health Information:

Training for staff:

Providers must make sure all staff are trained on how to

support people with learning disabilities.

Hampshire County Council offers a service that gets

information on what training providers and staff need.

This group is called PaCT (Partnership in Care Training).

They arrange training courses for staff and also offer

information on their website.

First aid Training:

The group suggest that all staff have training in first aid.

All staff must know how to spot that someone is choking

and how to give first aid treatment. Staff must be

trained on how to help remove what is in the person’s

throat and blocking their airway

Training for everyone:

St John’s Ambulance offer training for anyone who

wants to learn about first aid. The British Red Cross also

offer a course on Emergency Life Support.

Health Information:

There is a lot of information on the internet on food

choice and eating well. There’s information on health

action plans, oral health and meal planning. All that

information is in easy read leaflets and can be found on

www.easyhealth.org.uk and www.cwt.org.uk

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Raising Awareness:

The Group want more carers to know about difficulties

with eating and drinking. The Group want carers and

support staff to have good information on:

o Knowing how to spot that a person has difficulty with

swallowing

o How to help someone who is choking

o How to refer a person for an assessment by a Speech and

Language Therapist

o How to support a person to eat and drink safely

o How to get help with checking the person’s capacity.

All groups of staff supporting a person should have good

skills and knowledge. This should include managers,

support staff, caterers and chefs. This will help them

check for signs of difficulties like chest infections, weight

loss and refusal to eat.

Recommendations:

New staff should have training on choking and first aid.

First aid trainers must include how to respond to choking

in their training.

Staff need to practise how to respond to choking in their

first aid training.

Speech and Language Therapists must offer training to

support staff on eating and drinking difficulties.

All care services should know about the information on

the NPSA website.

There should be more information for everyone on the

risk of choking.

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9 Going into Hospital:

Hospital Passports:

A hospital passport describes how the person

communicates, using speech and non-verbal

communication. This should include how the person

expresses pain and discomfort. In Hampshire all services

are using hospital passports. A person must agree to

share their information with the hospital staff.

Sharing Information

A “Hospital Passport” must be ready for a person going

into hospital to share information about their health with

hospital staff.

In Hampshire most health staff use a form called

“Admission to Hospital Information”. This form has

information about the person’s health and includes a

section on eating and drinking.

The Group want the form to be revised to check for the

risk of choking.

Health Facilitator:

A Health Facilitator helps a person get a good service

when they are going into hospital. They can tell hospital

staff about the person’s capacity and give them training

on the person’s needs. They can give the person easy

read information to help them understand their condition

and what will happen in hospital.

Health facilitators need to check if the person is at risk of

choking. They need to share information with hospital

staff to make sure the person is safe while in hospital.

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Recommendations:

Every person should have a hospital passport with

information about their health.

The hospital passport should include any risk of

choking.

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10 Reporting Choking Incidents:

Support staff must tell the right people if someone

chokes. The GP must check the person’s health and refer

them for more assessments or tests.

The Social Worker must check the person’s social care

assessment to check if the person is still safe in their

home.

The provider must tell the Local Authority and the NHS

team if the person suffered harm so they can do an

investigation.

Role of the Police:

The Police will investigate if a person dies from choking

to check that there was no neglect, such as the person

died because their care plan was not followed.

Role of the Coroner:

The Coroner:

This is the person who finds out the cause of death

when someone dies.

The Coroner will write a report about the cause of death

and send it to the organisations. This will help

organisations who want to prevent any further deaths.

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Recommendations:

All choking incidents must be reported to the right

people.

The Police, CQC and the Local Authority must be told

if someone is seriously harmed or dies.

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11 Conclusion:

The Group know that death from choking is a serious problem.

The Group wants the Department of Health to get more information on the

numbers of people with Learning Disability who have choked and died in the

UK. This will help services understand how big the problem is.

The Group have put together ideas for preventing more deaths happening

as a result of choking.

People with Learning Disability have the right to make their own decisions.

They must be helped to understand their choices and the risk of choking.